Did Nana See?

In March 2015, I was being tapered off of Depakote and onto Onfi...it was okay. I was also taking Meloxicam for pre-arthritis, Ativan for my cluster seizures, and Tramadol for my straight up pain. As time goes by, those medications take a toll on your body. I was 30, and I moved as if I was in my 80s. But that's another part of the package.

My VNS was being increased. I was sounding like the Christian Bale batman when my VNS would go off. There was a definite strain on my vocals and what I felt. It was so frustrating and sometimes I would end up with a hoarse voice or not one at all the next day.

My absence seizures were worse than they had ever been. I was having 100+ absence seizures a day. Laundry was even hard labor. I was so frustrated and annoyed. But there was one person I could never ever be annoyed with. Nana.


My Aunt Maine (Saint Maine), was Nana's caretaker. Maine is my paternal Aunt. Nana had been living there for a while. My Aunt and Uncle made sure Nana was fully comfortable and had everything she needed. They put in this wheel chair elevator thing on the back porch to get Nana out of the house when she would go on visits. I had fun using that elevator.

Maine had called to see if I wanted to spend some time with Nana while she and my Uncle went out of town. I absolutely wanted to! I missed my Nana!

It was August 2015, I had my appointment with Dr. Combie (P.A.) to adjust my VNS and my medications a few weeks before. Do you see where this is about to go?

Saint Maine and I. I was so excited she actually let me
take a picture of her with me. She doesn't do pictures

After the surgery, I just hadn't been the same. My brain, believe it or not was just worse off. I knew it was going to take time but holy shit did it take a major left turn.

Here we go. August it's just me and Nana. We had just had some ice cream together. She was ready for bed. For whatever reason, Nana was having such a difficult time getting out of her chair and I was very concerned about the fact she was struggling like that. Yes I was helping her move, she was 93. She kept saying "I'm sorry Lovey." It was my special name from her. Another favorite.

She was finally able to get the strength to get out of the chair. We made our way to her room. We went through her bedtime regiments. She told me goodnight and how much she loved me. Gave Nana a big smooch goodnight and went back to the living room not far from Nana's room. As in I could hear her just fine from where I was. I didn't sleep well. I kept checking in on Nana and just wanted to make sure nothing odd was going on. Well, wrong person to worry about, my absence seizures were letting me know I didn't get enough sleep.

The next morning, Nana and I had breakfast. Her nurse, Monica, was scheduled to come in for Nana's bath so we just kicked it in our pj's. Something wasn't right though. My absence seizures were going crazy and the length of them was getting longer. I was stalling big time. I called Joel. I told him what was going on and he told me I needed to call my mom to have be there with me.

My Aunt Marg and me. It was our family reunion,
the tag isn't so I can remember her name

My parents are about fifteen minutes from both of my Aunts. My Aunt Margaret was supposed to be coming by to get a list for some groceries. My mom gets there. My Aunt Marg gets there. Monica gets there for Nana. Lucky me! I mean that seriously.

I was bitching about my absence seizures and how bad they were. I sat down and grabbed my crochet stuff (Yep, I'm one of those people) and started to crochet with my mom next to me. Well...Hi paramedics! I was better at figuring out what had happened. I just thought oh shit. I looked to my mom and said, "Did Nana See?" The answer was no. I was so relieved. Then here she comes around the corner in her wheelchair with Monica. She was just smiling at me. I smiled back at here like nothing had happened. The paramedics are just some of my friends here to visit, they forgot to change their clothes.

Here is the what we missed part. I made that horrible sound, my mom looked over and got me down on the ground. First off, my mom has one of the worse backs. But, when that adrenaline kicks in, she can move 190 tensed up pounds to the ground like it's nothing. Also, why is it that every time I have a grand mal I'm in some dangerous situation?? Driving, scissors, crochet sticks.

My mom had my Aunt Marg call 911. Now Marg has seizures at night and is controlled, but she's also never seen one. So this was new to her. The 911 operator was confirming the address, Marg was getting frantic, something like yes that's the address can we get some damn paramedics here?? Something along those lines. Monica, grabbed Nana's oxygen tank and put the oxygen on me. Very chaotic.

I had to go to my parent's after that. Nana time was over. She called to check on me a lot that day.

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The VNS

I've been leaving you in suspense, waiting to get to the real intense shit. Well, let's start shall we?

In 2014, our department at work made some changes. I was now a Student Success Coach. It was like being an adviser at a University. It was incredible. I loved my job even more! I had been there for a year and even had a few awards!

Some upsetting things happened though. I had over a thousand students that were just mine, to plan their classes to graduation and get them registered. It was hard to keep up.

Then the Phoenix gave up on me. I was making excellent money, the most I ever had in my life! But that was not the time to have to trade in the Phoenix for a new car payment. I had Storm now. My newly used silver Toyota Camry. So grown up. She was great on gas mileage, but she wasn't the Phoenix.

I had a different boss, an awesome boss who was very understanding and made sure that I had help keeping up. My team was great too, awesome peers. We all had each other's backs. My team took on their own students and mine too. Everyone now had to know I had epilepsy. I was so grateful but also disappointed in myself. I could feel that I was losing this battle for control.

I had to have another VEEG. This time, I had to take my FMLA. All of it. Ultimately, this was the end of my promising career

It was in November that I was checked for my second VEEG. I stayed longer this time. I still didn't have a grand mal, but Dr. Barken felt we had enough information from the EEG to present my case to the surgical board.

I was scheduled to have the VNS implant in January 2015. This was my first surgery, I was surprisingly calm. The nurse started asking me to talk about myself, I think...then I was all done. So that's how being put under works! I was super loopy but felt faaaabulous!

Dr. House said that most people didn't need to take the pain meds after the surgery. I'm guessing they were super heroes? I was in SO much pain!

I was laid up for about a week. The VNS wouldn't be activated for another month. Activated, so weird like I'm a robot. It was clear that I wasn't going back to work. Joel and I moved back in together. I filed for disability, six months later I was officially disabled. Didn't see that in my future...ever.

In February 2015, I was activated. They let me know that it would take some time to make adjustments. I had been on Depakote for six months now. I had gained fifty pounds during that time. Depakote was no longer Jekyll, it was Hyde. Hyde on steroids. Ready to start some fun? Let's go.

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Sparky

It turned out that Dr. Barken had reached out to my mom a while back to try researching me and my siblings. I wasn't having that. Then she would turn out to be my new doctor. I was still on Topamax, and I had starting a new job. I LOVED my job. I was working for an online school for adults, and I was in the financial aid department. I was a very sparky co-worker, I made the office lively and entertaining! I was also such a smart ass. Everyone thought I was hilarious. Let's be honest, I'm pretty funny.

I finally felt like I was serving the common good. Making sure that these students, even though they were adults, wouldn't make the same mistakes I did. There were A LOT of students that I would talk to in a day. There was one student I had talked to a few days in a row. I was trying to help with her financial aid. I had been told when I started that job, that I might cry. I laughed, I was much tougher than that. Or so I thought.

This student had called the next day and I talked to her again. This time, I didn't know what I was talking to her about and what I was talking to her the day before. I was trying to get more info from her, then she laid it on me. She started to get frustrated and then said, "Is there something wrong with your brain or what??" Oh damn. The issue we were trying to figure out for her had to be done with my manager anyway. So once I transferred her, I headed to the bathroom.

I wept like a baby. I mean WEPT. I looked in the mirror for a while and finally accepted that I couldn't keep pretending like nothing was wrong with my memory and my seizures. I went back to my desk. My boss could tell I was upset. I looked at her and said, "No I didn't break from the pressure, she asked if there was something wrong with my head and I have epilepsy." There it was, I finally let work know.

I had my first appointment with Dr. Barken. She is an incredibly brilliant doctor. Thank God she had a medical student with her. She would start speaking in this super high intelligent language and I would just look at the medical student to translate. The translation was that MY gene had mutated somehow. Since I had been on so many medications and not controlled, it was time for my first VEEG.


In the end of August through the first week of September I looked like this. Super hot right? The goal was to determined if I would be a candidate for the VNS (Vagus Nerve Simulator).

Here, you can read about it to get more depth:

VNS Info

In summary, it's a device that looks like a pacemaker. It goes in your chest, and these leads go to your vagus nerve, I just say my neck area. It's supposed to be very effective to those who do not respond to medications alone.

I was supposed to stay until I had a grand mal, but my brain wasn't stressed out enough. I was only having absence seizures like I had never felt before. I had been checked in for just under a week. My absence seizures were back, to back, to back. Eventually, I had a breakdown and was throwing up and crying. I was done, I was so done. So I got to go home. Going home meant a new medication. Depakote, round two.

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